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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Started Eating Gluten Free Yesterday.
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9 posts in this topic

Hi everyone, I started gluten free yesterday. I'm convinced this may be what has caused me a few problems. I've always had extremely irregular periods and it didn't even start till I was nearly 18. After eating bready especially bagels I would have severe stomach cramping. My hair grows at a much slower rate than others and i'm having trouble losing weight. I have only been gluten-free for 1 day and have dropped 2 lbs.I was not calorie restrictive at all. I hope its not a coincidence because that is a lot for me. I'm also more tired than usual today. Anyone else have these symptoms? Is one day to fast to see any results? Thanks.

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Make sure you get your thyroid checked. It can cause late puberty and hair issues.

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Welcome to the board. The first thing I am going to ask is if you have been tested for celiac. If you haven't it would be a good idea to get tested before you start the diet. You can call your doctor and ask for a lab slip for a celiac panel if your doctor has been aware of the problems you have been having. Once you have been gluten free even for a short time going back on gluten for testing can be quite a painful experience.

You doctor should also test your vitamin and mineral levels, especially B12 and D as well as test you for anemia.

IMHO it is unlikely that you would lose 2 lbs overnight from going gluten free. Some of us do lose weight after we have been on the diet for a bit for a variety of reasons but gluten free is not a calorie restricted diet. In fact many specialty gluten free foods are quite high in calories.

If your doctor resists testing you for celiac because you are over weight insist on it because of your symptoms. Many doctors don't realize that you can be overweight and celiac. I was the heaviest I was in my life pregluten-free but in my case it was because of edema because a long period of misdiagnosis had damaged my kidneys.

Do read as much as you can here as the diet has a bit of a learning curve and keep in mind that we can still need the diet even in the event that our celiac testing comes back negative.

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I agree with all that Raven has said.

Get tested before you take gluten out of your diet.

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Raven's right. Much easier now to go back on then it would be had you waited weeks.

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Make sure you get your thyroid checked. It can cause late puberty and hair issues.

I have had my thyroid checked and It was within normal range. I developed in every other way except my period, so not sure if that really counts as late puberty.

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I strongly agree with Raven's advice - call your doctor and ask to have all the tests Raven suggested ordered as soon as possible because you'd like to remove gluten and have learned that this will adversely effect the results of these tests.

Removing gluten can make an already difficult process much harder - don't remove it unless you are certain you don't wish to pursue a diagnosis.

Let us know if you have additional questions.

Good Luck :)

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Get tested first. I feel as if I'm dying, went gluten free for only 4 days. Endo finally answered and said she will run the blood work (tomorrow), so I have been eating gluten at each meal for last 10 days. Never thought I would be happy to never see bread or pasta again.

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Ditto everyone else. :)Great advice there...

I did lose weight, about 15lbs now, which began after I had been gluten-free about a month. My belly got noticeably flatter within about 2 weeks and proceeded any weight loss. It was a nice bonus to feeling better. LOL

Double check where your TSH was in the range if you can. I ended up with Hashimotos hypothyroidism because of untreated celiac disease, and for the first 10 years of it, my TSH was within normal range but at the high end of it (a 3 to 6 something in a range of .2-6) and I had hypothyroid symptoms (similar to celiac) the entire time. I am fairly confident that if the doctors had run a TPO Ab or free T4 test, I would have been diagnosed and treated much earlier... and felt better years ago.

Good luck to you, and welcome to the board. :)

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    • Weird Reaction
      Hi Cristiana, You are quite right, there could be something wrong with the batch. I have often wondered this myself when I've had symptoms. A lot of manufacturers recall products when they find contamination issues, I often wonder though, how many products 'sneak' under the radar and no-one knows for sure; it could be the reason why so many of us wonder what we did to get 'glutened'. 
    • 9 year Old going through testing
      Thank you everyone. I have scheduled a second opinion. He last biopsie came back and he is lactose intolerant.     
    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
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